Quality of life of post-stroke patients and their caregivers.

With improvements in health care, more people survive stroke but many have to cope with the physical, psychological, social and functional sequelae, resulting in increased personal and public costs. Cerebral stroke causes a significant deterioration of the patient's functioning and worsening of her/his quality of life. Long–term disability caused by stroke is a common problem in all countries and its incidence increases markedly with advancing age. The assessment of the Quality of Life could be as well the evaluator of sequelae of stroke as an indicator of the effectiveness of the post–stroke rehabilitation. In this review article, the contemporary state of art in assessment of the post–stroke Quality of Life has been presented. The emphasis was placed on participation in terms of personal factors and environmental factors of post–stroke persons and their caregivers.


Quality of Life post stroke measures
Quality of Life (QoL) assessment has been an important part of the evaluation of stroke patients and their treatment for more than 30 years. QoL is difficult to define and no universal definition of this term exists. However, there is a general agreement that QoL is a multi-dimensional construct that consists of at least three broad domains: physical, mental and social. Researchers and physicians have often used the health-related quality of life concept in the field of medicine, which specifically focuses on the impact of an illness and/or the treatment on the patients' perception, of their status of health, and, on subjective well-being or satisfaction with life [1]. The impact of stroke on health related quality of life may be disastrous; stroke can affect multiple domains of life. To assess these consequences several instruments have been developed. Most of them are questionnaires based on a patient's subjective self-report or self-evaluation. Some of these tools provide information about perceived health status, for example: physical and mental functions, ability to perform everyday activities/roles or the limitation in performing these activities/roles. The other scales capture an assessment of well-being or positive/negative evaluation of particular life domains or satisfaction with life (or specific life domains). There are also questionnaires which produce both information about perceived health status and subjective evaluation [2]. The distinction is made between generic and specific measures. The latter involve items concerning a particular disease or health problem and are considered more sensitive than the generic ones, especially when detecting changes or differences among treatments. Ferrans highlights that when choosing an instrument for a particular study, a researcher should be conscious about the type of information that the very instrument elicits. The reason is that the nature of the self-report of the health status and the subjective evaluation of the well-being is different, it is influenced by different factors, and consequently these two types of QoL data correlate with each other only moderately, even if they assess the same QoL domains. Furthermore, it is crucial that the instrument fits with the aim of the study. Table 1

Burden and quality of life in caregivers of stroke patients
Stroke has a great impact not only on the patients' lives but also on the lives of their caregivers. The Carers of stroke patients provide informal care ranging from physical help to psychosocial support. As a result, these carers may experience high levels of burden, associated with characteristics of the patients and of the carers themselves. This burden can result in a deterioration of the carers' health status, social life and well-being. About 80% of stroke patients return home after the acute hospitalization and at least one-half of them require permanent or temporary help from other people in the home setting. This help is usually provided by the closest family member often a spouse or a child, most frequently a daughter who lives with the patient. Family caregivers provide basic personal care, help the patients to perform daily activities, give emotional support, and organize medical and social community service [16].
Caring for stroke patients is burdensome and may influence several objective and subjective aspects of the caregiver's life, such as physical and emotional health, morale, work life, finances, social mobility, interpersonal relationships and sex life. It has been reported that an elevated level of anxiety and depression was present in 17% to over 50% of subjects in the studies on the psychological consequences of caregiving, and, in most of these studies, it was higher than both available The elevated burden among stroke victim carers seems to be long lasting. The existing studies, mostly cross-sectional, show that high level of burden is experienced in 25% of close family members at 1 month after stroke, in 28% at 2 months, in 28% -39% at 3 months, in 31% -40% at 4 -6 months, and in 51% at 1 year after stroke. [20, 22, 27-29 The burden and strain have been the dominant paradigm in assessing the impact of stroke on the caregivers' life. These studies however capture only the negative consequences of the caregiving role. It is worth highlighting that the caregivers not only perceive burden, but also may experience positive emotions such as satisfaction, pride, gratification and feeling closer to their partners [17, 25, 36]. This is one of the reasons why the QoL concept, which seems to be broader than burden, is also important. QoL reflects well-being and according to WHO definition refers to "an individual's perception of their position in life in the context of the culture and value system in which they live and in relation to goals, expectations, standards and concerns" [38].
It has been shown in the literature that increased burden is significantly related to decreased health-related quality of life among stroke caregivers particularly in mental health and social functioning domains [30,39]. Several other determinants and predictors of QoL have been reported, such as: physical disability of the stroke survivor, behavioral disturbances following stroke, personal attributes and depression of the caregiver and social support [17, 33, 40]. They are more or less similar to the predictors of the sense of burden, and their role in the quality of life as in burden may vary between the acute and chronic phases of stroke [30].
In summary, stroke has a great impact on the quality of life of patients and their family careres who provide long-term day-to-day care. Not only the patients but also their caregivers need professional attention and support in order to maintain their own physical and emotional health and well-being.